Where There’s a Will, There’s a Way

The Will Herndon Research Fund at Beyond Batten Disease Foundation

Our goal is to SAVE WILL and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help today!

In 2009, Missy and Wayne Herndon founded The Will Herndon Research Fund (HOPE) to raise awareness and support for research into finding a cure for juvenile Batten disease.

This effort began in honor of their son, Will, who was diagnosed at the age of 6.  This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declined cognitive skills and seizures.  Imagine blindness, Alzheimer’s and Parkinson’s diseases all rolled into one.  Batten disease has proven to be fatal, often by the late teens or early twenties.

When the Herndon’s journey began, virtually no viable research existed. They partnered with Beyond Batten Disease Foundation in Austin, Texas, and brought a team of researchers from Italy to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, to focus on a treatment for juvenile Batten disease.  Initially funded with a $2.5 million grant, it represented the largest investment ever made in the history of Batten disease research.  After numerous experiments and diligent analysis, this team presented the Batten community with a significant medical breakthrough – a treatment that slows the progression of juvenile Batten disease.  At this very moment, it is undergoing FDA-required validation studies, with a goal of being approved into a clinical trial.

These studies are expected to last until late 2017 and projected to cost $3 million.  Securing funding for this this project and successfully entering clinical trials, would mean that Will and the many children who need it most, would receive that treatment!  And, HOPE researchers would gain valuable, much needed time to focus on finding a cure.

In the years sine Will’s diagnosis, Missy and Wayne have never been filled with more HOPE than they are now.  They are in an intense race against time, relying on the prayers and support of family, friends and a generous corporate community.  Thank you for visiting The Will Herndon Research Fund.  Please continue to explore this page and see the many faces of HOPE at fundraising events that occur year-round.

Join our HOPE family and stay up to date on all activities by adding your email address in the box below.

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What Will My Future Be Like?

By: Will Herndon

I often ask myself, “What will my future be like?” In some ways, I wish I could know. In some ways, I know it will be marvelous to watch the mystery unfold.

One thing I plan to work hard for is learning braille, for I really do HOPE to be able to read. It would be so great if I could read about my favorite animals all by myself. Therefore, I plan to work really hard with Mrs. Otto to make this dream come true.

Another HOPE and dream I have is this: I want to have my own guide dog. I can see me now, walking to the dog park. My parents would be so proud of me when I become more independent. They will say to me, “Look at you, doing all these things by yourself,” and then I’ll know I’ve reached my goal.

Three is always a lucky number, and so I save my most important dream for last. I truly HOPE and HOPE that I can work with animals. This is my most cherished dream. I would like to be a zoo keeper. I would like to train animals. I would like to rescue animals in need.

“We are the stuff dreams are made of.” I know this is true. By my dreams, you know me. Wish me well, my family. I begin my future now.

Going the extra mile…

Will’s Warriors for HOPE are a group of passionate and caring individuals who turn the everyday into extraordinary. Whatever you do – you can do with the added benefit of helping Will and the many other children afflicted with juvenile Batten disease.

Are you an avid runner, bicyclist or swimmer? The next time you enter a competition; do so with Will in mind. Are you planning a birthday or anniversary celebration? Have your friends or family make a donation in honor of the special occasion! Having a neighborhood pot luck? Ask your guests to make a contribution for Will in addition to bringing their dish. Do you plan hostess parties? Considering having one especially for Will and donate your profits to his cause.

Whatever the reason, become a Warrior for Will and watch your effort easily multiply while helping the Will Herndon Fund reach a wider audience and move closer to our goal of eradicating Batten Disease.

I'm a Runner

Finish-Line

  1. Make certain to REGISTER for your chosen race through their website.
  2. Create your Fundraising Page »
  3. Have you already created a Fundraising Page? Find it here »

I want to support Will

wills-10th-Bday

Whatever your function, you can support Will in two ways:

  1. Create a fundraising page and invite guests to contribute online with a credit card.
  2. Collect donations at your gathering and submit a check to HOPE or make an online donation with a credit card.
    • If submitting a check, please mail to:
      The Will Herndon Fund
      PO Box 132646
      Spring, TX 77393
    • To make an online donation with a credit card:
      Click Here »

I want to support a Warrior

RACE-2013-2

Upcoming Events:

  1. HOPE Summer Art Camps

    Sessions offered in June, July and August at Young Artist’s Art Studio.
    More info »

  2. HOPE Under the Stars 2016

    Saturday, September 10, 5:30pm – 12:30 am

    Join us for the 8th Annual HOPE Under the Stars at The Woodlands Waterway Marriott Hotel & Convention Center. Sponsorships and tickets available online beginning July 2016.
    More info »

  3. 10 For Texas Race

    Saturday, October 8 at Market Street – The Woodlands

    Want to Run for HOPE? Join us for the 11th Annual 10 For Texas series. Kids can run in the One for Texas! Make sure to register early – this race ALWAYS sells out!

  4. Lights of HOPE 2016 at Main Street America

    HOPE is honored to host a house at Main Street America’s Lights of Hope. We were privileged to win the coveted $10,000 grand prize last year and are hoping to have another memorable experience this Fall. The event opens on Saturday, November 19th and continues every Saturday from 6:00 – 9:00 pm through December 17th. Volunteers are welcome to staff our activity stations.
    Send a message to hope@willherndon.org to become involved.

  5. HOPE on the Green 2017

    Monday, April 10th at The Woodlands Country Club Palmer Course

    More info »


Past Events

  1. Monday – April 11, 10:30 Registration, 12:30 Tee off

    HOPE on the Green 2016: The 7th Annual HOPE on the Green tees off at 12:30 pm on the beautiful Palmer Course at The Woodlands Country Club. Registration opens February 2106. More info »
    collage.hog15 (2)

  2. Saturday, March 5, 7 am

    The Woodlands Marathon Series 5k, Half & Full Marathons: Meet us bright and early for a group photo at 6:45 am by the Flag Poles at Town Green Park before the race begins! Not a runner? Sign up for the HOPE Cheer station and encourage all the runners along the route while sharing a little HOPE!

  3. Friday, March 4, 5:30 pm

    The Woodlands Marathon Family 2K: It’s Race Night! Meet us by the Flag Poles at Town Green Park for a group photo and awards ceremony just before the Family 2K race begins.
    The Woodlands TX Family Portrait Photographer

  4. Saturday, January 30, 8:30 am

    Marathon Pep Rally & 2k Warm Up Run: Meet us at Mitchell Intermediate School for our Annual Marathon Pep-Rally and Warm-Up 2K Run!
    facebook.header.kids.run16

  5. Friday, January 15, 7 pm

    Mitchell Intermediate School Faculty Follies: Mitchell Intermediate School, home to the Mitchell Mustangs and Will Herndon’s 6th grade class, proudly presents the 2nd Annual Faculty Follies show. Join us for a night filled with laughter and HOPE. Online ticket sales open in December.

  6. Thursday, January 21, 5 – 9 pm

    Jewelry Boutique Alex and Ani donates to HOPE: Alex and Ani on Market Street is holding their Grand Opening Party on Thursday, January 21st from 5 – 9 pm and you’re invited!  15% of all sales from the party will be donated to HOPE.  Join us for champagne, lite bites and a ribbon cutting ceremony.  Treat yourself to something beautiful and benefit HOPE!  Alex and Ani is located opposite of the Hyatt Hotel, directly across from Bath & Body Works and Pot Belly.

  7. Saturday, December 19

    Christmas on MainStreet: Our final night at MainStreet America ended with a WIN!!!  Thanks to your generosity, HOPE brought home the $10,000 grand prize!!  Thank you to everyone who cast their vote, the many volunteers who staffed the house each night, the performers from TADA- Texas Academy of Dance Arts and from The Woodlands High School, and to Bass Interiors and our decor volunteers for making the house sparkle with HOPE. A heartfelt thanks to the MainStreet America team for giving us this opportunity to share Will’s story with a new audience.
    12.5.4

  8. Saturday, December 12

    TWHS Improv Show: The 3rd Annual TWHS Faculty v Students Improv Show raised $5072 for HOPE!! A heartfelt THANK YOU to Mr. Peters and his team for producing and performing another fantastic and hysterical show. Congratulations to the students for bringing the trophy home! Can’t wait to see you again next year!

  9. Saturday, December 5

    Christmas on MainStreet: The weather was fabulous for our dancers, carolers and volunteers who greeted hundreds of guests!  Each vote for “best house” gets us one step closer to $10,000.  Thank you to everyone who helped make the HOPE house the loveliest on the street!

  10. Friday, December 4

    Texas Winter Beer Fest: Thank you to Mark & Luis from The Woodlands’ Refuge Bar & Bistro and Rob & Marc of Texas Craft Beer Club for supporting HOPE !
    TexasBeerFestTexasWinterBeerFest2015

  11. Saturday, November 28

    Christmas on MainStreet: Not even the rain could dampen our HOPE spirit at the first night of The Lights of Hope celebration!  Thank you to everyone who joined us.
    Guests7.11.28

  12. Friday, November 27 – Friday, January 1, 2016

    Market Street Valet gives back to HOPE: Remember to valet park your car whenever you visit Market Street this holiday season and a portion of your fee will come back to HOPE.

  13. Thursday, November 26

    GE Run Thru The Woods: Congrats to our youngest Warriors who began Thanksgiving Day with a run for HOPE!
    RunThruTheWoods

  14. Sunday, November 22

    TADA Nutcracker Performance: THANK YOU TADA for honoring HOPE with your Holiday performance!
    Tada.Ds.Will

  15. Friday, November 13

    PURE Barre Classes for HOPE: THANK YOU Heather & Jamie for  an awesome lift, tone and burn-filled morning!  And thank you to everyone who came out – you raised $1,000!!

  16. Friday, October 30

    Cakewalk Style Pop-up Shop: THANK YOU Shirelle and the wonderful women of Cakewalk Style Shop for an exquisite afternoon of HOPE that raised over $8,000. We are so grateful for all you do!
    CakwalkShirelleMissy10.30.15

  17. Saturday – October 24

    Day of HOPE at Party City: THANK YOU Party City and Emily & Steve Morgan for raising $10,000 for HOPE!!
    HOPE.PartyCity.10.2015

Upcoming Events

You Can Do Something!

HOPE Under the Stars

September 10, 2016

HOPE on the Green

Save the Date
Monday, April 10th

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